I’ve had cholinergic urticaria for eight years now. When I first developed it, I found it truly unbearable! I couldn’t go to the gym, couldn’t sit inside my house (unless I had a fan 1-2 meters away from me), couldn’t sleep in my bed properly with a quilt on me.
I researched into it a lot and found out that the reason why you itch so extremely is because when you get hot your body should normally sweat, but if you suffer from cholinergic urticaria instead of releasing sweat to your arm-pits, your body instead releases histamines into your blood (which cause the extreme itching), which remain there until you are able to force a sweat eventually.
Therefore the only way to solve this issue is something that will prevent those histamines from causing an itch/rash on you, so that you won’t suffer when the histamines get released, will simply sweat.
Antihistamines made no difference whatsoever for me, and so the ONLY medication which works for me is Prednisone. (I need to take 10mg per day.)
I’ve been on this for the last 8 years, and had not had any cholinergic urticaria for these 8 years due to that, apart from when I tried to stop taking it, and then the itching returned. 🙁
My cholinergic urticaria amazingly went away in October (3 months ago), so I tapered myself off the prednisone, and have had no pred for 3 months without any itching! I was so extremely happy, and thought my cholinergic urticaria had gone forever.
Extremely sadly, however, a few days ago my cholinergic urticaria returned. I tried to ignore it as a one-off, but it came back every day when I went gym, so I’ve now had to restart taking 10mg per day of Prednisone (although I’m changing to 40 mg per day of Hydrocortisone tablets instead, as they are meant to have less harmful side-affects).
I have attached a photo to show just how devastating an effect the medications needed to enable coping with this condition have on your body/face though! 🙁
(I’ve attached a photo of my face 8 years ago, and one of how it looks now after 8 years of prednisone usage at 10 mg per day)
And whilst it may just look like I’ve become a very fat person now, my actual body weight is barely much more than 8 years ago (I weigh 86kg/13stone, am 5ft 10, and have a very muscley athletic body with 6-pack as go gym 3-4x per week for last 10 years), but yet I have the face and neck of someone who weighs 25stone/160kgs!!